Tuesday, September 23, 2008

In Which I Talk About Some Things.

Thank you for all of your kinds words, my friends. Some days, I hang on them.

(Psst -- have you all picked up your super-commenter award below? Do it. It'll make you feel good.)

I know I mentioned that I've been wanting to write a post or thirty about Fiver and school, but I've held off for two reasons:

a) you must be sick to death of hearing about it. You must be! I certainly am.

b) I don't really know what to say. All of my words are bottle necking until they form a congealed lump at the base of my throat which threatens to erupt into tears or shrieking at any moment, neither of which are considered appropriate behavior in mixed company.

All joking aside, this is a public blog, and while I love you all dearly, my friends (yes, you!), I cannot control who comes to call. At times, I feel limited in what I can divulge, out of respect to my son and the people who work with him. I love my kids' school and I feel a responsibility to be loyal to it. I won't get into any specifics, other than to say that the adjustment seems like it is equally hard on Fiver and his teacher. It is breaking my heart.

Rob and I have talked each other into a stupor every night, and we have always come back to the same thought: no one was prepared for The Real World: Fiver. And make no mistake, it can be grueling.

Fiver In Theory is an easy proposition on which to agree, because he is a winning child. He is funny, warm, bright, affable, and kind. People generally like him, they just do. When seen in short duration, more than one person has told me that they can hardly tell he has any problems. And that is true, to a certain extent. He is remarkably adept at compensating for his difficulties.

But Fiver In Theory and Fiver In Practice are two different animals. The only way to get Fiver is to be with Fiver. There is no amount of explanation that can prepare a person for him, and believe me, we've tried.

A large part of the problem is that he has neurological deficits that have no name. It is an incredibly frustrating position. Yes, we can tell people he has Sensory Based Motor Disorder, a category under the larger umbrella of Sensory Processing Disorder, but that is only part of the equation. He has other, unexplained physical problems, as well as some behavioral issues, all of which fall under the category X. SPD + X = Fiver.

His teachers, while well intentioned, are not quite on board with his needs yet. I truly believe they want to help him, but they are now faced with the reality of what it takes to help a child like Fiver. If a person is inexperienced with his conditions, spending six hours a day with Fiver can come as quite an awakening.

We have been in what seems like constant contact with his teacher, but it is quickly becoming clear that we will need to meet with an ever expanding list of professionals before we get to a place where Fiver is thriving.

I will be honest when I tell you that in my darker moments I feel eminently unqualified for this job. If my only task was to love him with every fiber of my being, then I would have no problem. I would give my own life for this child, but I cannot give him other people's acceptance. It's not in my power to make people understand him or help him, but it is in my power to be his advocate.

During one of our marathon conversations, Rob said that in many ways Fiver is one of our crosses. He requires more attention, more work, and more worry. But as much as he is our cross, he is surely one of our most precious and treasured blessings. He brings us more joy, more love, and more strength than we ever dreamed of at his birth.

It is true that in enrolling Fiver, his school has agreed to pick up our cross and help us bear it, but it is just as true that they get to carry our blessing as well. Our goal is to balance the cross with the joy. It's a tall order.

In the meantime, while I'm trying to find this balance, St. John Bosco will be hearing from me. Often.


  1. That was beautiful. Your love for Fiver shines through every word. Please don't doubt your abilities. You have recognized the problems, have a desire to solve them, and are praying. God definitely gave Fiver the right parents for the job, and He will be right there beside you all the way. And just so you know, I'm tagging along with prayers, too!

  2. They will most definitely find joy in helping you with this challenge.And once they learn from you exactly how, you will feel much better.
    I am quite sure he is a pure pleasure to know.

  3. Anonymous5:53 AM

    I know Fiver pretty well and I will say some special prayers for him. Fiver is great and I hope things get easier for you soon. Thinking of you...

  4. Keeping the prayers coming. I'm glad that the school wants to do right by Fiver as well. I hope that as everyone "gets to know each other" things will get smoother. St. John Bosco is a great choice and I'll have a chat with him on Fiver's behalf as well :)

  5. You ramble on as much as you need to and be vague when you want because I fully understand that blogging is much cheaper than a therapist while at the same time grasp that what goes on the internet has a pesky of staying there forever for anyone to see.

    I feel for Fiver's teacher. I know a little bit of that side of things from my volunteering experience. Right now I am trying to help a special needs child with an amazing singing voice fit in with the choir. His parents understand that I would be completely in the right to say his needs are too much, his behavior too distracting at times. But I want to do everything I can to include him. This is not the first or only child I'm working with. It's a juggling and balancing act rolled into one.

    If the school and teacher are working with you that is awesome and a testament to their dedication to children and education.

    Hang in there! *hugs*

  6. Oh, I can so relate to this.

    Our oldest has some LD issues (not the same as Fiver, I know) but it comes with the same heartaches. We are currently trying to get the online public school to come up with a plan for him, and it's like pulling teeth.

    For us, the answer is homeschooling, since I can work with his dyslexia tutor and alter his curriculum to fit his needs... with her help, it is easy for us now. But it's been a brutal road to travel.

    I'll keep y'all in my prayers. It's hard, but your love and support is what will get him through it.

  7. John Bosco will be hearing from me too for Fiver. What a hard transition for you all. I'm sure that after the adjustment period at the beginning of this school year Fiver's teacher will be able to see more of the joy that he brings to the world.

  8. I needed to read that today! I agree on many fronts...especially feeling at times very underqualified for the job.

  9. What a beautiful post. Fiver sounds like a wonderful little boy and your love for him shows in this post.

    I will be praying for you, Fiver and his teachers.

  10. Aimee, HUGS to you. That was so well put. God gave you Fiver because you are the best person to take care of him. With love and with everything else. Look at what an amazing job you are doing!
    I will also pray that things get easier with the school and that they too will always realize what a joy he is.

  11. I gave you an award over at my place... am I allowed to give it back to you? Anyway, you totally deserve it cuz you rock!

  12. "I would give my own life for this child, but I cannot give him other people's acceptance. It's not in my power to make people understand him or help him, but it is in my power to be his advocate."

    This entire post, and especially this quote, was so beautifully written. Fiver is definitely blessed beyond belief to have you as his mother and advocate.


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